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Update: 1 year on Tobacitinib!
HI All!
March 1, 2019 marked my 1 year Tofacitinib.
Either Xeljanz and or Generic Tofacinix from Beacon Pharma in Bangladesh.
Started on 10mg per day and bumped up to 15 mg per day in August of 2018.
I saw my doc at Columbia University in NYC on my 1 year mark.
He drew my labs and everything came back great!
I've currently been on 3 pills per day of Tofacinix (approx 15mg per day with probable slight dosage variation due to it being a generic)
My doc has me starting to wean off the meds, here is his plan for me:
I went down to 2 pills per day (10 mg per day) starting March 1,2019
After 3 months, if no shedding, no patches, he wants me to go down to 1 pill per day.
After 3 months, if no shedding, no patches, he wants me to try to go off completely.
Update on Pfizer Xeljanz co-pay coupon. The Co-Pay coupon is now 3 months FREE
You can use it once per year. It wasn't free for me last year, but it is now!
I called in and activated the coupon with Pfizer and next day walked out of the pharmacy in NYC with 180 free pills of Xeljanz. So I will be on the name brand for 3 months and then will switch back to my stockpile of Beacon generic.
No side effects. Current pics below. Last time I buzzed was Dec 16, 2018
Also a baseline pic from March 1, 2018
Thanks for all of your support guys and wishing everyone here healing in whatever way it comes.
Love of love,
N
Replies to This Discussion
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Permalink Reply by gqz on
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hi nicole, thank you so much for sharing your journey, which is such a pioneering that brings lights and hope to worldly people with this no-known-cure condition. we have a very young family member with AU and hopefully she can have her hair back. many thanks. bless you.
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Permalink Reply by NicoleT on
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Bless you too gqz and your little one.
I know that columbia university prescribes for kids and feels its very safe.
Do keep us posted.
xoxo
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I’m so happy for you!! I’m so skeptical to try to seek help. I’ve had AU since I was 3 and I’ll be 36 in two weeks. I just wonder would something like this work for me. It wouldn’t hurt to try right?
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Hi Angie!
I know that in the trials, ppl that hadn't had a hair on their body in 20 years regrew all their hair!
I think about 50% respond?
Worth a try!
Sending love!
xo
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I don't even know how to get started... You said you went to Columbia University in New York right?
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HI Angie,
Yes I did. Where are you based? You just need to get to a progressive dermatologist who has seen all the news and will prescribe for you. Happy to help if you want to message me.
Good news is columbia says xeljanz will be FDA approved for alopecia in 6 months time.
Meaning insurance cant deny coverage.
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That's great news to hear! I live in South Carolina but I will travel if I have too. I'll send you a friend request so I can message you. Reading stories like yours gives me hope and I'm so happy for you. And its nice to talk to someone who knows what exactly what I'm going through
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Hey, I think any excuse to visit NYC is a great idea but just in case you can't get there as often as needed, my (adult) child is seen by a doctor at Emory in Atlanta who has several patients on Xeljanz for Alopecia.
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Permalink Reply by Steve on
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Wow! Check out all that hair. Nicole, this is truly inspirational. I am SO happy for you - both that it has helped you so much and you have had no side effects. I hope it continues and you can reduce your dose too. You have helped me so much, more than you might know, and so many others too! Thank you for being so kind and patient with everyone and giving us your help and advice through our journey - I am eternally grateful.
All the best!
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